Author: Karen

We had a few sunny days here in WA and it’s started everyone to thinking about summer. My plans are to enjoy my backyard, have some adventures with my dogs, and keep read read reading. Just finished book 70 of the year!

I have a little chemo break happening right now because I’ve made the decision to switch to Doxil, which will start May 25. This is the first time I’ve changed treatments due to side effects and not because the current treatment was not working. My tumor markers have tripled since November, so I feel like chances are the Taxotere was starting to lose it’s efficacy. But the markers overall are still low and the PET scan showed only small progression, so I could have kept doing Taxotere for a few more months. But it was getting so hard to just live. I was spending most of my time sleeping and the few days after infusion were so miserable that I would just lay in bed and tell myself I was never going to do this again. So, time for change. Not sure that Doxil will be any better, but I’ll learn more in a few weeks!

Another plan for this summer is to do the Walk for Old Dogs to fundraise for Old Dog Haven. If you’ve got a few bucks to donate to the care of old pups, please check out my fundraising page! http://odhwalkforolddogs.org//karen

I know, it’s been a year since I’ve posted. My only excuse is that I’ve been tired. And I use Facebook more often to write quick updates, so it’s felt redundant to also post here. But I’m going to try to get back in the habit of updating this site!

This past year has had highs and lows, like any other. Last winter was rough with side effects from Taxotere. During the summer I got to take a break and do just Herceptin and Perjeta for a few months. It didn’t work, but I felt better and had a lot more energy. I even started the Couch to 5K program and was jogging! But then I broke a bone in my foot and when that healed I started Taxotere again, so now even walking is tiring. I get out of breath just walking up the stairs.

I’ve moved into a new rental house in the Bridle Trails neighborhood in Kirkland. I love the house and it’s got a great yard for the dogs and an amazing clawfoot bathtub I’m using every night. There is more space here than I need, but it’s nice to have room for guests. Finnegan and Piper are happy here and they are as adorable as ever.

I’m back on Taxotere every 3 weeks and I’ve made it through 5 rounds so far. It’s getting more and more difficult to tolerate. The weekend after each infusion I feel like I’ve been beaten up and I can hardly move. Some of the side effects are constant, such as neuropathy in my feet, fatigue, bloody noses, mouth sores, watering eyes, runny nose, etc. I’ve recently had thrush in my mouth and a fungal infection on my face. I smell like chemicals, especially right after chemo.

The plan for now is to do one more Taxotere infusion and then have PET scan to see how well it’s working. Then I will have to decide if I can continue, take a break, or try a different treatment. I don’t feel like I have a very good quality of life at the moment, so I am hopeful that I will at least get to take a break. Over seven years of chemo has taken its toll. . . I’m not sure how much more my body can take. But the reason I have made it this long is because I am lucky enough to be what they are now calling an “exceptional responder.” It means that chemotherapy works for me and for a longer period of time than most other patients. My 7+ years is more than double the average life expectancy of metastatic breast cancer patients. So I’m very, very lucky. . . but there is a high cost as well. And not just with the physical side effects, but with the anxiety and stress. Unfortunately, there is no way to take a break from those.

Yesterday was the memorial service for my friend Gwen, who was part of my MBC support group. Gwen was just 38 and left behind a husband and two daughters. There is just no way to understand or explain why she got this disease, why no treatment ever worked, why someone with so much life would lose it so quickly.

Gwen and I clicked from the beginning and I learned so much from her. But the biggest lesson was definitely about bravery. She had a tattoo on her wrist with an arrow and the words “Be Brave.” At her service yesterday, there were temporary tattoos of this for everyone. To be honest, at first I didn’t understand or agree with all of these “bravery” references all over her Facebook page. I hate the battle/war metaphor we use for cancer. There are no winners, the fight was rigged from the start.

But what Gwen was talking about was not the bravery patients show when we continue treatments that suck. It’s not the bravery of tolerating pain or discomfort. It’s not battling to win against the unbeatable. Gwen was talking about the bravery of continuing to be open and loving and happy despite the cancer. She didn’t shut herself off from family and friends. Her example encouraged them to not shut themselves off from her, either. It’s not easy to stay close to someone with terminal cancer. People want to protect themselves from the inevitable pain of loss. But Gwen inspired the people in her life to continue to show up for her. To check in with her, to laugh with her, to share even more of themselves. That was how she would “be brave.”

The program at her memorial included something she wrote on Facebook last Autumn. It’s simple but so powerful:

Reminding myself this morning that bravery doesn’t mean you are without fear. It simply means that you find courage inside to keep on keeping on in spite of that fear. Cancer sucks. #bebrave

I’m going to try harder to follow Gwen’s example. To keep showing up for my own life and the lives of my friends. To reach out more. To take every opportunity to tell people that I love them. I’ve never been a very emotional person and I have an even harder time being demonstrative. So folks, be prepared. I’m going to hug you when I see you. I’m going to say “I love you” when we part. I’m going to email you and text you and ask you about what’s happening in your life. And I’m going to expect you to tell me. Just because I have cancer doesn’t mean that your problems aren’t important. So complain to me, ask me for sympathy, expect me to support you. I want to be there for you. I want to have closer friendships in my life. I want all of us to be brave enough to risk the pain that will inevitably come when we say goodbye someday. I want to be worth that to you, and to myself.

Three rounds of Taxotere, Herceptin and Perjeta have knocked my cancer out. But it’s also ravaged my poor body and I feel about 100 years old. This is what I look like today, and if you can imagine I feel even worse. I’ve got a few eyebrow hairs holding on. The eyelashes are gone, which makes my constantly watering eyes even more irritated by everything in the air. I look like I’ve got 2 black eyes. My nose constantly runs and my lips are so pale. My skin looks kind of gray. Nobody offers make-up to match a gray complexion. My fingernails and toenails are lifting off. And this is my “good week,” the last few days before we do another infusion of poison on Wednesday.

Luckily, I only have to make it through three more rounds. I can’t really imagine it, but I keep telling myself that I can do it and it will be worth it– really burn those cancer cells out so I can buy myself a bit of a break. And in the end, a little more time. Though I have to admit the the time I’m getting right now isn’t of the best quality. But the cancer is on the run. Those little cells are getting their asses kicked and hopefully won’t be brave enough to grow again anytime soon. I’m trying really hard to be excited about the latest great PET scan results. But it’s difficult when I’m just so tired and I feel like crap.

At the moment, my biggest struggle is my eyesight. Besides causing watery eyes, Taxotere actually leaves the body in your tears so the skin around my eyes is constantly irritated, stinging and itching. My vision is blurred from the tears but also it seems the eye muscles themselves are tired. I can’t drive at night anymore and I can only look at the computer for short periods of time. Even if I make the text huge on my Kindle, reading is really difficult. You all know how much I love to read and I spend a few hours each day, at least, absorbed in a book. Losing that is a huge blow and I am hopeful that the problem will reverse itself when I can stop the chemo for a bit. In the meantime, it looks like I’m going to have to try some audio books. Anybody into those? Recommendations? I subscribed to some podcasts, too. It feels so passive and boring to just lay around and listen to something, but maybe I’ll be pleasantly surprised. I do try to just listen to the TV without looking at the screen too much, but it’s not very exciting.

I’m happy my treatment is working so well. I’m frustrated with the side effects. I grieve for my other Stage IV friends that aren’t doing as well right now. And the ones we’ve lost. I mourn for the life I feel like I missed out on. This is not how I expected things would turn out, for sure. But none of us get a perfect life, right? I have a wonderful family and friends and house and the best dogs on the planet. I have fewer worries that a lot of folks. Overall, life is good. I just need to be reminded of that sometimes! Six years is a long time to live with cancer.

Three more rounds. A few more months. The damage will get worse, but then it will get better and better. I can get through it easier when I know it’s working.

The transition from Kadcycla to Abraxane has not been an easy one. First, I had trouble with my platelet counts being too low to get chemo. Suddenly, I was seeing problems with my WBC counts and neutrophils. I would go in for chemo and be sent home to “wait one more week.” When it finally seemed like things were going to get on track and I’d had a few doses of Abraxane, my creatinine went sky high which meant that something was going on with my kidneys.

After 9 hours in the ER one day, we were sent home and told to drink more fluids. Um, okay. I got a dose of Abraxane the next week after my creatinine lowered, so we thought it was a fluke thing. But the next week was worse– my Creatinine was 4.9, when it should be around 1.0. They gave me 2 units of blood and arranged for me to be admitted to the hospital the next day. 2 days in the hospital got me fluids, magnesium by IV, another transfusion, and no answers about my sudden renal failure. Again the creatinine was lowering on it’s own, so they sent me home.

After much investigation of my entire medical history, the best they can come up with is that Abraxane was causing problems to my kidneys. The weird thing, though, is that this has never been reported before and Abraxane is processed by the liver, not the kidneys. But it’s the only thing that seems to fit right now, so we are reporting my case to the FDA and my oncologist is working on what to do next. In the meantime, I’m getting my fluids, got one dose of Herceptin, and am still planning to go on my trip to Hawaii next week. I’ll get to see my oncologist the week of Thanksgiving and hopefully by then she will have a plan ready and my creatinine will be back to normal.

This has probably been the most frightening episode since the discovery of my brain met. I find myself worrying when I try to fall asleep, wondering if my kidneys are now going to have this response to every chemo. I need my kidneys, and I need them working well. But I also need chemo. If I cannot take chemotherapy, then I’m looking at a long, slow march of trying to keep the cancer at bay with things like radiation and finger-crossing. I need systemic treatment to keep the cancer from going back to the organs.

I cannot control any of this, and once again it’s just a waiting game. If I have to wait around, I may as well do it in Hawaii. I leave next Saturday for Kona, the big Hilton Waikoloa Resort that Alex and I stayed at last year. The group includes 7 friends and one practically brand-new baby. I think the baby and I will be on about the same nap/bedtime schedule. I have my own room, we’ve got a couple of rental cars between us, and we are going to have a great time. My wonderful friend Maggie has a temp job in Bellevue that week, so she is going to stay at my house with the dogs (they LOVE her). So I am going to pay extra for the shaded, cushioned pool chair and read my book and drink some mai-tais and enjoy being with friends. The Kona coffee festival is on during the week that we are there, so that should be fun. I’m a little nervous about how uncomfortable the plane ride there is going to be… nobody likes six hours in a coach seat of a totally full plane. Because I paid for my ticket with miles, I don’t think there is any kind of option to upgrade. So I’ll just have to take my ativan, bring a seat pillow, and hope that once we get there I can walk off the plane without being hunched over in pain.

I’ve been struggling the last several months, the Kadcycla side effects got worse and worse and my body is so worn out. I did get some relief from Palliative Care and learned more about how they can support me. I’m on long-acting Morphine now daily to manage pain, and I’m taking Ritalin every morning so I can stay up most of the day. Otherwise, I sleep about 20 hours a night.

My markers are rising any I started showing some signs of allergic reaction to the Kadcycla, so we are onto a new plan. Tomorrow I start Abraxane and Herceptin. Abraxane is a chemotherapy in the taxane family. My very first chemo was Taxol, this is the same drug but it’s in a different suspension liquid and so steroids are not required with it. I’m very happy about that!

I’ll be going in for infusion every Wednesday, three weeks on and one week off. That means more time at SCCA, but at least the infusions are only a half hour each. With blood draw, waiting for the drug to be mixed and delivered by the pharmacy, etc., my trips to SCCA will probably be about 3 hours each time. If they are behind at the pharmacy, sometimes it will be 4 or 5 hours. But still, not a full day and then I can come home and snuggle with my sweet dogs.

Today I am trying to catch up on things (like this blog!) and prepare as much as I can. It’s the only thing I can control, so I spend my time organizing groceries, making sure I have all the meds I could possibly need, doing laundry, etc. I’ve gone a little crazy buying new fall clothes, but I’ve lost 40lbs on Kadcycla and need new things that fit. I’ve also got all of my scarves and hats ready. I should keep my hair for 2-3 weeks after we start the drug, I think last time it was about 3 weeks.

Fingers crossed that Abraxane works and side effects are minimal. Send good thoughts, please!

So it’s been a long time since I’ve posted! I’ve been having a good time on my chemo break, busy with trips and fun. In February I went to Hawaii with my best friend, Alex, and our great friends Tracey and John joined us for 5 days of the trip. We stayed at a big resort on the Big Island and it was an awesome way to relax and celebrate Alex’s birthday. There was a lot of walking to get anywhere at the resort, but I enjoyed the covered cabana chairs and bar service!

It was difficult to leave after only a week, but that just means that I need to go back again soon. In March I went to Arizona to visit my parents while my Aunt and Uncle were there. We had a great time playing cards and going out to some great restaurants.

Looking ahead, I’m thinking about a trip to Santa Fe in April and another trip to Carmel again this June. And there is a possibility of meeting up with my cousins in San Francisco in July. But I’m not buying any tickets yet because April 1 I have to start back on chemo again. . .

I had 5 months on just Herceptin and Faslodex, that was quite a good break so I’m happy about that. So while the news was expected, it was still a bummer to hear that my last scan showed growth in the cancer in my bones. There is both more activity in the spots we knew about and new spots that have popped up or returned, so there’s no getting around going back on some kind of chemo. Because Kadcycla (TDM-1) never stopped working for me (I stopped it because the side effects had become too much), we are going to go back on it with the hopes it will continue to do it’s job. At least I know what to expect from this drug. But I am a bit nervous about it. . . remembering the debilitating fatigue, the gruesome nosebleeds, and the pain everywhere. But hopefully it won’t start out that badly and I’ll get some time before it builds back up.

I have more than 50 cancer mets in my bones, from my collar bones and arms down through my ribs and spine, and into my pelvis and femur. It takes my body a lot of energy to fight it so I have still been really tired the past few months. The pain I was having in my tailbone that sparked going on morphine hasn’t bothered me much lately, but the pain everywhere else is exhausting. My ribs hurt, my hips hurt, I wake up every few hours and have to change positions because everything just hurts so much. And that is while on narcotics. I probably need to increase the dosage, but I’m just not mentally ready to go there yet.

I have almost two more weeks before Kadcylca starts, so I’m hoping to have some fun. I might just go up to Whidbey for a few days or I might stay in town and go shopping and eat out and try to see friends. Call me if you want to meet up!